Sharing secret thoughts

Bonnie Sandler, S.W.

Alzheimer's Disease is a long journey taking a family through many stages as the disease progresses. Each stage brings different reactions and emotions.

The early stage is difficult on families because the AD individual is aware of the changes they are going through: memory loss, confusion and difficulty performing familiar tasks. The person may become depressed as they recognize these changes and losses, over which they have no control. They are often treated with antidepressants.

Still struggling with the diagnosis, families are relieved to know why their loved one's behavior has changed. They are also confused because there are many good days with no symptoms.

In the later stages, the family witnesses their loved one's inability to manage their own care. They no longer recognize faces – they have a blank look in their eyes that makes us wonder how much of the person we knew is still there.

My friend would visit his mother once a week in the nursing facility where she lived for several years. She had been an accomplished professional and a strong maternal force. My friend spoke to me of being emotionally wiped out by these visits. He no longer recognized the bedridden woman as his mother and had mourned her for years. She no longer recognized him either. When she died, he felt a mixed bag of emotions – relief, and guilt at feeling relief. At the funeral, he told me that her death had been a blessing.

Family members ask what they would want for themselves if they were in this position. They remember their family members as independent and strong people and feel that they would never want to be dependent on others for all their needs.

One important purpose of a support group is being able to share thoughts with others who will nod in understanding and not sit in judgment. It is a safe place to share feelings of anger, frustration, sadness and grief.

Some of these thoughts would be viewed by mainstream society as taboo. But nothing is taboo among people going through similar experiences and feelings.

Take advantage of our short summer

Bonnie Sandler

It’s not a coincidence that requests for my social work services decrease in the summer months and increase dramatically come fall. As we all know, life in Montreal includes remarkable seasonal changes.

We naturally spend more time outdoors when the weather is warm. Leaving home requires less preparation, and walking outside doesn’t mean struggling with snow, ice and the fear of falling. Walking not only provides a source of exercise but is therapeutic since it is known to decrease agitation. The caregiver is well advised to take advantage of our short summers while they last, but it’s best to avoid large crowds and noisy events. I would think twice, for instance, about attending a fireworks exhibition. Consider activities that your loved one enjoyed in the past — picnics, park outings, drives to the countryside, small outdoor musical concerts, short cruises and even visits to a driving range for those who played golf.

Attention to particular behaviours of the individual should be addressed. For example, sit where the possibility of an early departure would be the least disruptive. Don’t forget sunscreen, a sunhat and water. Avoid especially hot temperatures that could cause discomfort and dehydration.

Don’t be surprised if your loved one insists on wearing a sweater even in high temperatures. Some AD individuals dislike air conditioning and overdress to stay warm. It can be difficult for the caregiver who feels the need for air conditioning yet must keep it off to please their loved one.

Sundowning is a behavior of many affected by AD. It occurs in the late afternoon or early evening hours as the sun sets and darkness appears. Agitation and anxiety increase, making these few hours especially trying. Some professionals have compared Sundowning to Seasonal Affective Disorder (SAD), when depression occurs due to fewer daylight hours. Keeping the home bright during this time can help.

The words of the song by Gershwin are summertime and the living is easy… I don’t promise easy, but I do think life, for both the caregiver and the AD individual, is easier with summer weather.

Please address comments and questions to bonnie@theseniortimes.com.

To drive or not to drive

Bonnie Sandler, S.W.

All too often when I ask families about their loved one’s driving abilities after a diagnosis of Alzheimer’s, I’m told there’s no serious concern. After further questioning it’s not unusual to learn the individual is “only” driving close to home (where accidents never happen?) – or only lost their way a couple of times, or scratched the car in the garage. Yet when I ask whether they would allow their children to be in the car, the answer is a firm no.

Who is protecting the neighbours’ children? I’m not insensitive to the significance of driving to someone who has been driving most of his or her life. Having car keys taken away can be devastating. But driving demands good judgment, skills, reflexes, concentration, and sensory abilities.

The burden of this decision should not be left to family members. In California, physicians must report a diagnosis of Alzheimer’s to the health department, who in turn passes this information to the motor vehicle bureau. The Quality Standard Subcommittee of the American Academy of Neurology recommends driving tests be conducted every six months for those with AD.

Why don’t we have a similar process in place here? I suggest that doctors be obligated to report a diagnosis of cognitive impairment to the SAAQ, who should mandate frequent driving tests. This would relieve the family of having to decide where to draw the line. Caregivers have enough on their plates without having to play the enforcer in this respect.

In the meantime, these signs should help families know when it’s time to schedule a driving test:

• Driving too slow or too fast
• Unable to find the way to a familiar place
• Slow in reacting to a new situation
• Not observing traffic signs
• Hitting curbs
• Agitation when behind the wheel
• Confusing the gas and the brake pedal
• Scratches on the car
• Trips taking longer than usual

Above all, safety is not negotiable!

Contact Bonnie at bonnie@theseniortimes.com.

Enjoy the moment: embrace the experience

Bonnie Sandler, SW

Caregivers tell me about shared laughter and special moments with the person they’re caring for. But most articles emphasize the stress related to caregiving. What about the tears of laughter and warm loving times?

Caregivers will be more likely to find these special times if they learn to balance their lives, are members of support groups and are able to ask for help. Overworked and exhausted caregivers who insist on doing everything themselves will be less likely to experience these times. How sad. Stress robs us of our ability to be clear-headed and make smart choices.

The spouse who feels committed to care for their loved one without any outside help, whether it be out of love, loyalty or obligation, will often end up burnt out and unable to enjoy special moments. They have the least to offer their loved ones with regard to quality of life. They tend to the necessary tasks, but they deplete their energy by not enlisting help. This leaves them with little if anything to offer in terms of love, kindness, understanding, and warmth.

I have met many cognitively-impaired individuals who have a great sense of humour and interesting stories to share. They communicate through touch and facial expressions, beautiful music and art. Although Alzheimer’s robs the person of many of their abilities, their essence is still present.

The individual may respond inappropriately to situations, but a good caregiver may be able to find a way to make the most of an awkward experience. Alzheimer’s is a long and difficult journey and different stages will bring different behaviours.

A friend told me that her mother now enjoys singing old crooner tunes with her and eating ice cream cones – experiences they haven’t shared in years. Yet clothes shopping, which they used to love, has become a bore. As a caregiver you need to be flexible enough to adapt to new experiences.

Those of us with most of our cognitive abilities intact find living in the moment a difficult if not impossible task. But a person with Alzheimer’s lives mostly in the moment – their memory impairment prevents them from remembering yesterday, and tomorrow doesn’t exist for them. How many of us are able to do this? If there’s no concern about what others think about us, that’s truly living in the moment.

Someone with Alzheimer’s may start singing or dancing in the middle of the street while people stare. This is a joyful time for them. The question is whether the caregiver can join in or try to stop the behaviour out of embarrassment. A good moment shared is a joyful time. Allow yourself to enter the moment. Remember who the person you are caring for was before the illness and get to know the person he or she is now.

Tips for finding joy in caregiving:

• Don’t do it all by yourself
• Find time for yourself
• Continue with activities you’ve always enjoyed
• Join a support group
• Educate yourself
• Don’t fight the disease
• Forget the shame, go past it
• Do not allow others, ignorant of your journey, to judge or advise
• Surround yourself with people who care about you and understand your situation

Comments and questions can be addressed to bonnie@theseniortimes.com.

Worrying about the glass of wine

Bonnie Sandler

In my assessments of individuals with cognitive impairment, I have noticed that many include a history of lifelong struggles with excessive worrying, anxiety, obsessive-compulsive disorder, and/or depression. This alone is something to worry about. Children of affected parents are concerned about their own future as it is, and now we have more to worry about as we try not to worry, knowing that excessive worrying could be a factor in this disease.

People who have experienced clinical depression are 2.5 times more likely to develop Alzheimer’s, according to a study published this April in Neurology, the journal of the American Academy of Neurology. If depression occurs before age 60, the likelihood increases nearly 4 times. There are several theories as to why this may be, and further studies are expected to explore the relationship between depression and Alzheimer’s.

Recent headlines warned women that drinking a glass of red wine daily might raise their risk of breast cancer. Should we worry? I was happier when I read that there may be constituents in wine that protect against dementia. More confusion. Are we to choose which disease we would most like to prevent? Are these studies causing us more anxiety, therefore putting us at greater risk for Alzheimer’s? Dr. Nathan Hermann, head of geriatric psychiatry at Sunnybrook Health Sciences Centre in Toronto, cautions that this is only "one of a number of studies" that have examined the issue and that "the literature is very divided on whether depression predisposes to dementia or not, and is seriously flawed methodologically, and there are no firm conclusions that can be made." So he's not stressed about it, but how do the rest of us know when to worry? Short of digging into the entire body of peer-reviewed research ourselves, the best antidote to this kind of news might just be a good Merlot.

We all need to find ways to relax, but it is especially important if we are caregivers living the 36-Hour Day (like the book of the same name). What works for one person may not be the right stress buster for another. I like to relax after a hectic day by having a glass of red wine. I rationalize that it’s good for my health. A hot bubble bath surrounded by candles also works. But does the glass of wine enhance my risk of breast cancer, or prevent dementia and heart disease? Will I worry now about having this glass of wine? Will the worry affect my cognitive functioning as I age? Will I have the opportunity to age if I have the wine?

Tonight, after a stressful day, I plan on having a glass of red wine and treating myself to a long hot bubble bath. I won’t allow myself to worry. I will simply enjoy my personal choice of de-stressing.

Please address questions and comments to bonniesandler@gmail.com.

Caregiving with dignity

Bonnie Sandler

Language for children should not be used for adults, regardless of any cognitive deficiency. Adults with care needs should be treated with dignity at all times. This includes the use of proper language:

• Diapers – this is a word used to describe a product designed for infants and children who are not yet toilet trained. I cringe when I hear this word used around older adults. When dealing with individuals with incontinence issues we should not use the word diapers. Protective underwear, added under garments are just some examples of terms that are dignified and respectful.
• Babysitters – are sitters for babies. This term should not be used for adults who are unable to be alone. Using words like companions or caregivers is preferable.
• Activities – toys are for children. Although there are toys for adults it would be best to refer to these by their specific names ex: puzzle and not toy.

Bathing is another area where we have to be sensitive to a person’s dignity. Many individuals who require assistance with bathing and or dressing are uncomfortable being naked in front of another person. There are ways to keep a person’s body covered while providing the needed care. If the individual is feeling uncomfortable they may become agitated and thus combative. Using specialized clothing that covers parts of the person yet allows for full bathing/showering will calm the person and preserve his dignity. Even properly placed towels can be used.

Celebrations – Birthdays, anniversaries and special occasions need not be ignored because your loved one is no longer able to remember these special dates. Families can continue to honor these times with cakes and goodies and specially chosen gifts for their loved one. Comfortable slippers, a warm shawl or wrap, costume jewelry, or an activity appropriate to that individual are just some ideas. A CD with old time familiar music, a DVD of old sitcoms such as ‘I Love Lucy’ or special musicals can be enjoyed by all.

These are just a couple of tips for preserving your loved one’s dignity and honouring them with celebrations of special dates. As a caregiver you will discover different ways you can adapt your caregiving to ensure the dignity of your loved one.

Comments and questions can be sent to bonniesandler@gmail.com and may be used in future articles.